On eating and diets and feeding tube awareness week

It’s Feeding Tube Awareness Week this week – it’s where I’m allowed to shake my fist at strangers for looking so horrified when they realise Mikaere has a tube in his face. They go from smiling in anticipation as they peer into the depths of the buggy to pulling a face and looking away, not making eye contact. Or there will be the weird whispers (I can HEAR YOU) about how ‘that baby has a tube in his face’.

Kidding. I won’t shake my fist but I will give an epic death stare.

My kid has a feeding tube, yes. Bar three glorious/terrifyingly difficult weeks before he went into his seizure coma, he’s had one his entire 15 months. Without his tube there would be no eating, no meds and no thriving. That’s what the tube is there for.

I’ve talked about Mikaere’s NG tube before. How it works, what it does (delivers medication and food into his belly, by passing his mouth/throat. Which means it’s got nothing to do with breathing – probably the second common comment after the obvious ‘theres a tube in his face’). I’ve also talked about how we’re stillwaiting for the next step – a gastrostomy (where of instead of down his throat a tube will go through his abdomen straight into his belly).

I’ve even talked about safe feeding, and how a few months back Mikaere was so ill, it wasn’t safe to eat and he was declared nil by mouth. I’ve never been more grateful that Mikaere had a tube where we could still feed him.

As it stands, Mikaere is a different kid today. SO different from that sick little baby. His swallow is awesome and safe he’s protecting his airway like a CHAMP. He’s eating maybe half his feeds orally.

However, the things Mikaere is eating isn’t like a neuro-typical kid. No finger foods. Nothing solid. It’s all pureéd goodness and formula. Also… as a side effect of him being super ill beginning of December, Mikaere lost a lot of weight.

He’s been gaining, but he’s not anywhere near where he should be. As an example: Mikaere is height wise in the 98 percentile range. He’s LONG. Super long. Or tall, I guess is what you’d say if he was standing upright. But weight wise, Mikaere is below the 25 percentile. He’s skinny. He’s lost all his baby weight.

So we saw our nutritionist and looked over his diet, and while we’ve introduced purées it’s not been quite enough.
Our dietician has suggested an older kid formula equivalent with more calories… but it feels less like a formula and more like a “nutritionally complete” chemical liquid stored in tiny plastic bottles.

Other neurotypical kids aren’t on it, why does Mikaere need to be? So instead of chemically made up formula, we’ve been stepping it up. I’ve started introducing other things. Calorie dense foods. Avocado. Cream. Cheese. Honey. Chocolate mousse (that one goes down a treat). He often gets a pudding after meals. The calories, they are going in. Take that, nutritionally complete chemical formula.

Having that conversation with our dietician wasn’t particularly easy. When I talked about a blended diet she practically panicked and said ‘let’s not be too hasty’. But here’s the thing – when I start weaning Mikaere off formula, I’m not going to replace it with chemical milk. I’m just not going to. I hate the idea of feeding it to him.

I know that the blended diet is controversial (apparently the tubes aren’t made for blended food… only formula. Does that not sound like the biggest line of bs ever? If it is blended correctly it’ll be fine and unlikely to block the tube). But as far as I can tell, considering that Mikaere is eating part of his meals orally, we’re headed for a blended diet.

Which is to say, a blended diet through a tube. No formula. No weird replacement chemical milk.

And I know. I know this isn’t a thing you usually have to think about it – unless you’re knee deep two feet all in the world of special needs, tubes and feeding and weird chemical older kid meal replacement formula are not things you need to think about.

So, in the interest of Feeding Tube Awareness Week – next time you see a kid with tube, please smile and say how cute they are. When you see a parent feeding a child with a syringe through a tube that goes into their belly – don’t look away. Smile at them. Go say hi, say that the green goop looks delicious and their kid is the most adorable you’ve seen. If going up to talk is too much, just meet their eyes and smile.

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Team Mikaere is for those following the journey of Sam, Elly and Mikaere - a baby boy with Nonketotic Hyperglycinemia. We've partnered with Joseph's Goal to raise funds for the NKH Research done by Dr Nick Greene as part of UCL. He's currently the world leader in NKH research.

We're so hopeful that better treatment options will be found for kids with NKH. It's so rare, less than 500 kids worldwide are diagnosed with it. Every pound we raise has a direct and profound effect on the research that can be done.

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Help us raise money for NKH Research. Help us help give Kai future. It sounds so cheesy, but holds a sobering amount of truth for us. NKH is terminal, without treatment Kai may not have a future.